Pediatric Nephrotic Syndrome Patient Stories

Aaron woke up with slightly puffy eyes when he was about two and a half years old. At the time, I had thought it was just a product of being sleepy. I called my husband, who was out of state on [...]

Alexis, or Lexi as she is known by her family, was diagnosed with congenital nephrotic syndrome when she was six weeks old. Since diagnosis, she has been admitted to the Children's [...]

When I was two, my entire body was swollen and I was in a lot of pain. I could barely open my eyes. None of my clothes fit me anymore, and my feet were so swollen that it hurt when I tried to [...]

Our son Andrew was first diagnosed with Nephrotic Syndrome at the age of 22 months. He woke up one morning and his eyes were very swollen. I really didn’t think much of it. I simply thought it may be

My Nephrotic Syndrome was controlled with Prograf for three years until I started relapsing every time someone near me sneezed. The steroids were sort of working to keep me under control, but [...]

When Emma Kate was almost 3, we noticed her swelling. Then she ended up getting sick for days and not eating or going to the bathroom. Thankfully, her doctor was in tune to what I told her [...]

We had previously sent in Emerson's story over a year ago and thought it may be time for an update. She was diagnosed with Congenital Nephrotic Syndrome at 8 weeks old, and spent most of her [...]

When I was a baby my mom knew something was wrong so, she took me to the hospital. I was diagnosed with nephrotic syndrome. I always stay happy because I know my mommy and daddy get very sad [...]

Kelly was diagnosed with Nephrotic Syndrome on April 16, 2015. It has been a difficult journey, but Kelly has always stayed strong and positive through it all. He is a big-hearted young man that [...]

The ups, downs, and scares of having a kid with NS! My 6-year-old was diagnosed in April of 2016 with Nephrotic Syndrome. It was a life-changing day for us! We had NEVER heard of NS before. We [...]

Landon had just celebrated his 2nd birthday when he became swollen. We took him to the doctor right away, and within 24 hours he was diagnosed with Nephrotic Syndrome. He went through five [...]

I was diagnosed with Nephrotic Syndrome at the tender age of 3. My mom pressed and pressed that something just wasn't right. Finally, I was diagnosed at a local hospital in February of 2015. We [...]

Mia was diagnosed with Nephrotic Syndrome right before she turned 3. We noticed that she was swollen around her eyes, and her belly was getting very large. I just thought maybe she was dealing [...]

Over the course of 10 months, Mossy was constantly unwell. Each time she picked up a virus or infection, her eyes and face would become puffy and swollen. We spent a huge amount of time at the [...]

My son jammed his thumb in May of 2014. The hospital commented on his elevated protein levels in his urine and sent him home. In August of 2014, he needed a physical to begin kindergarten, and [...]

It can happen to anyone. Will is an inspirational boy, the youngest of three sons who loves to play sports. When he was 3 years old, he was diagnosed with Nephrotic Syndrome. Living with [...]